Comparing Treatment: - Ramsays Disease
Please select all that apply:
Near all medical insurance stops payment on mental health. See insurance company physician and get a personality disorder / depression call then your headed for litigation or no payments.
Bloods etc for other causes, there was some talk of holistic care though the infectious diseases specialist held back on that as heart and neurological investigations were still ongoing.
Neurologist called it non specific neurological symptoms in a complex case history which was a little disappointing, on the treatment front it was a label then back into GP care.
A specialist clinic without resources for chronic healthcare.
Exactly. In my area, the CFS clinic runs on Friday afternoons, serving 5 NHS areas. Because of this it took over a year to get diagnosed having already been very unwell for a year before referral. No more than 2-3 consultant appointments per patient, then discharge to GP, with 3-monthly call from encouraging OT to discuss pacing and keep notes.
So as you say, a specialist clinic chronically underfunded for chronic conditions.
Sorry but I can't really vote on this as I have no diagnosis. I think it might be good to include something for people like me in your poll. There are a lot of us, I think, judging by what I've seen in support groups and forums online.
Here is my input for the poll:
My GPs will not even discuss it with me, despite trying to determine more what is wrong since about 5 years ago. I fit the CCC and ICC criteria as well as the new IOM report criteria. However, I have not been tested for a host of other illnesses to eliminate possible other causes for my symptoms. I have a confirmed diagnosis of Fibromyalgia, and after that I got nothing except pain meds and 6 sessions of acupuncture. I have been given no other care from my doctors and lately when I asked for a more standardised treatment including some tests to determine what is causing orthostatic intolerance, possible angina, etc. I was told that the partners of my surgery had met and decided that I should consider going to another surgery. Dismissed by my whole surgery, when I had hardly ever bothered them. But they never wanted to visit me at home and it took several calls from my support worker and social services to get a visit, at which I was treated like a bother and written a prescription for anti-depressant meds, with no explanation. I tried to ask a question about this and the doctor stood up and headed for the door. Months later, another doctor came to my house without any prior arrangement. Surprise visit. My carer was here and let her in. I said I had not been informed that she was coming and she did not reply. On the surgery website her interest is stated as mental health. She did very little. I was in a lot of pain that day. I had requested an assessment for ME/CFS several times from the previous gp who was a registrar, and she had put me off, without even discussing it, but finally agreed (again without discussing it) and it was only after that I did some research and found out the local Rheumatologist who runs the hospital dept and the local CFS clinic is very much of the opinion that this is a psychosocial disorder caused by wrong illness beliefs and deconditioning. I read his articles and research and decided not to go for the appointment, especially after seeing three people comment that he had been arrogant, rude and sarcastic to them when they went there. I had to explain this to the 'mental health' interested GP in my letter, along with a list of the symptoms I have which seem to be of concern (I am 95% or more bedbound) and a list of references about ME from reputable and recent sources. That is when I got the letter suggesting that they all think I should find another surgery. I do not know how to move forward, and it is particularly difficult since I have found no doctor listed in whose catchment area I live, (although there are several practices nearby) whose website or details show anything about ME or related issues. Many of them do not indicate any willingness to make home visits. I do not know how to ask to go to a new surgery and have home visits, let alone how to find a doctor who is interested in treating ME properly. I do not know of any Rheumatologist in the nearby area who believes this is a biomedical illness and would want to treat me according to the proper guidelines.
With the poll system eight questions are all that is allowed an amount that paints in broad strokes. An amount of options barely sufficient for beverage orders within a restaurant menu and less suitable for the detail of regional variations "postcode lottery" of health provision.
Diagnosis delayed by inadequate resources for the many still in limbo with the boxes that add the detailed explanation until detailed questions can be fashioned.
2010 - Initially GP suspected MS and referred me to Neurologist who said it was probably Post Viral Fatigue Syndrome (which she said is a real illness) or MS and did MRI to confirm. MRI showed some de-myelination, so had Lumbar puncture which ruled out MS.
Then referred to CFS clinic - which then closed to new patients due to loss of staff!
In the interim had second MRI after flare-up and numbness. Chest x-ray and ECG after Sarcoidosis panic. Bloods every couple of years.
The CFS clinic re-opened in 2014, I had 6 home visits from the Occupational Therapist - who is a total star. She said current thinking is ME is an Neurological Autoimmune condition and gave me help with pacing and energy management. She tried to introduce GET but as I was in a flare-up she didn't push it and actually got me to stop doing much activity. She helped me come to terms with this disease, for which I'm grateful.
I was formally diagnosed by a specialist in November of last year, she called it ME, said it was biological and not completely understood yet. She prescribed lots of different meds for the different symptoms.
Since then my GP has been addressing the symptoms individually.
As I understand it, there is no effective treatment yet (fingers crossed for Rituximab) so in the absence of that they (my GP and CFS service) offer what they can; happy pills, sleepy pills, pain relief etc. and support and sympathy where they can. I've ticked the inadequate service box because I don't see how there can be an adequate service until the disease is better understood and treatments become available.
I sincerely hope that in a year or two Rituximab will be available privately, if not on the NHS.
Original questions assessing perception and treatment resources against an international background. Providing the detail on a map fromfeedback once an outline is in place.
good idea.
I think most of us would be happier if they just got adequate and up to date information from the internationally respected ME clinicians, and then discussed possibilities with us. I would be so grateful for that kind of attitude, and for an opportunity to discuss each of my several serious symptoms, in order of seeming urgency. Approaching appointments with a carefully formulated list of questions and issues in my own priority order (with of course the qualification that they should be able to spot something critical and change the priorities..... This has been something I have tried and failed to get any results because the illness itself was not taken seriously. So I think first issue of all is to get a GP who believes it must be treated as a biomedical illness and save the psychological part for after the body is looked at. Some patients get told that they are not going to get support or letters for benefits because they do not want to get well. This is the sort of thing that happens when you are stuck with a doctor who just can't meet you at the basic understanding of what the illness is. I don't think most of us are craving attention or trying to be a pest. Seems that in some areas the stigma is greater than others.
Sorry if I've come across dismissive - not my intention at all! The symptom that gets me most is brain fog/information processing so I can't keep up with the medical science stuff that some of you are so good at, I skim read it (rather like a child) and get the outline not the detail (these days I can't follow an episode of Midsummer Murders!!!). If I was firing on all brain cylinders I can imagine I'd be getting really wound up with the NHS/NICE and campaigning for change - instead I'm a passive passenger in this half-life.
All I have the capacity for is keeping myself ticking over, staying positive and avoiding getting any worse before a treatment comes along. I'm also in the 'post-diagnosis honeymoon' period, my family have stopped worrying at me that I've got something fatal that's been undiagnosed and my doctor is empathetic, believes that ME is a real disease and doesn't think I'm loopy/anxious/hypochondriac/attention seeking.
I'm well supported practically by my husband (he does all the house work and cooking) although finances are tight. But my wider family are supportive and I believe they will be able to help financially if I need private healthcare should a treatment come along. I'm aware I'm really, really lucky and not everyone has the support I have.
You may be aware from my previous posts that my daughter has been recently diagnosed, I've been quite upset on her behalf, that though the support team in her area also say ME is a 'real disease' they could only offer her group therapy, CBT or GET and suggest B12 jabs. I tell her to just hang on in there, that now, of all the times to have this diagnosis is the best time to date - there is soooo much positive research being done all over the world and a treatment isn't too far away.
I must add that I've metaphorically cocooned myself in a rose tinted cotton wool bubble! I don't read or watch the world news, I avoid people who wind me up, I've surrounded myself with things that make me happy and developed an out of sight out of mind attitude and I'm just treading water till something changes.
Sounds like you are in a good place to take care of yourself and have others taking care of you.
I am also sure that with the family supporting her, your daughter will be much better off than if she were alone facing a doctor who just told her to 'pull her socks up' or some other useless thing.
Your situation is what we all would love to have, but a supportive online community can go a long way to help.
I believe that each of us needs to do whatever it takes for us to feel the best we can feel. Some of us are better off shielding ourselves from stress and politics. I have tried that, but found that I felt absolutely powerless and discouraged about life.
By being as informed as I can be, I feel that I am using my abilities in some way so I don't feel so hopeless. It's a delicate balance and I can become very disheartened at times. (Believe it or not, I used to be an academic, but now I can relate to the sense you described of just skimming over things and not getting details. My retention and concentration are pretty poor. I can communicate better than I can read and learn.) I sign petitions of all kinds of and share info info on social media. In this way I feel I can add my part to an ongoing campaign for human rights, awareness of things like ME that are so misunderstood, and other important issues.
I fully respect that others may not be able to cope with so much and some have to really be careful not to do too much (including me) We each have to do what is right for us. I am so happy to hear that you have a lot of what it takes to feel better and improve. I agree that there is much to be hopeful about.
I have to say that all the NHS intervention I've had hasn't made any real physical difference - if anything I've gained a little mental function at the expense of physical stamina. The difference is I'm at peace with this illness and trust that I'm believed and supported. I've also reached a place where I know that even if I never get better my life is still worth living and I've surrounded myself with emotional armour.
Finding this site has also helped - every breakthrough or piece of information posted reinforces my growing hope and belief that we'll get treatment.
I'm sincerely glad there are people like you in our community that stay informed and campaign for the rest of us, but please don't wear yourself out. If it was in my hands we'd get nowhere! I used to be a campaigner too and was doing a BSC, now I watch Dr Who, lurk on the internet and cry over The Archers!
I hope you can find an advocate who can help you find a sympathetic doctor. I'm in Cornwall, one of the most deprived areas of the UK and our PCT is in constant turmoil - so if there are progressive doctors down here they must be out there too.
Thank you and please, please take care X
Thank you too!!! We all need each other.
i made big mistakes after my first diagnosis of Fibromyalgia. I pushed and pushed because i was in a relationship where I was constantly being harassed to do more and criticised for sleeping 'too much' etc. Doctors and friends tried to get me to get up out of bed or the sofa every 30 minutes when I was having severe P.E.M. and crashing. Earlier on I was hounded to walk for miles, or even run (I did not run, thank goodness, because after getting that advice I learned that I have osteoporosis, too!) I was always a very hard worker who would keep going beyond reason with any project or job. I loved my work, and I loved life, so getting this advice to do more and more was horrible for a person like me. I think many people with ME or fibromyalgia have similar situations when first diagnosed.
There may be no undoing the damage that is caused by too much exercise when we are sick. I am much worse now and look back with sadness that I did not have any real understanding or helpful medical advice. I just want others to have what I did not have, and I want us all to be treated with dignity and accurate science based diagnoses and treatments.
You and I have both come to terms with an illness that has taken a lot out of us and made life difficult. I have spent my time grieving what is lost, including my hopes and expectations of what my later years would be like. I am happy and mentally healthy now. I neither live in a fantasy nor do I focus on the negatives all the time. I feel I have a balanced view and a realistic one. I got a strong sense of the same in what you wrote. This is what is needed when we speak to others about this illness.
Thanks for being here!
Post viral with 14 week course get well again over afternoon a week. I slept a lot of it hour journey wiped me out travelling in community ambulance with people that had all kinds of bugs.
Noted inadequate services for chronic illness support
Long waiting for any specialists was a real scary time.
Agreed, really scary.
Trying to act well for family and friends so as not to frighten them took a toll too. Some cried with worry that I was going to die, some tried to get me to push myself to prove nothing would happen if I carried on walking, some were angry with the NHS and kept pushing me to ask more and more of my GP.
My diagnosis was a mighty relief for me and the people around me - nobody's happy about it but at least we know what's what.
My daughter was diagnosed by a specialist last week and this has meant her place of work now have to adapt to meet her needs which is a relief to us all. She's been ill for at least 3 years but the possibility of ME wasn't raised until last year. From her GPs referral to the CFS clinic in her area (Surrey) to her diagnosis from a specialist took about 6months.
Emergency hospitalising after collapsing at a friends wedding so many tests and no explanation all tests are clear. Family and friends wanted to help they could see how sick I was what do you tell them I am good that leaving a wedding in an ambulance unconsios is fine nothing too see here.
Having a name for the problems was a big relief some treatment and care when I had got really sick fighting for my life back on normal tests why wouldnt I keep on.
appreciate your kindness many thanks
Support from first signs of illness ?